I'm new to this, eager for advice

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Lala

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Hi everybody!
I'm trying to learn as much as I can so that I can finally start to feel better!
Here is my story...
I've had migraines for longer than I can remember... They started when I was about two years old (I'm 25 now). I learned my triggers and was eventually able to control them, but about a year ago they started to go out of control. Avoiding my old triggers didn't work, and I started getting symptoms that scared me, I was having twitching randomly and when my headaches got really bad, I couldn't find my words the way I needed to. My primary care doctor didn't really give me much help, and so after being ignored for a while I just made an appointment with a neurologist.
My neurologist sent me for an mri and mra of my brain, each of which came back normal. When I told her I was twitching, she sent off for additional lab work...long story short I was HIGHLY B12 deficient, and that issue has been resolved. After that got treated, the twitching continued so she sent me for an eeg...it was abnormal during the hyperventilation period, making her think that I might be having absence episodes. She asked if anybody had ever said I seemed to be staring off into space...some of my friends said yes, others no.....I went and had 24 hr eeg monitoring and it came back as normal...

So...I let it go for awhile, trying to just monitor things and see how I feel. My migraines have gotten better, but I have had at least 3 staring spells that I am aware of. Also, I keep having awful dizzy spells. I have a hard time describing what they feel like, but it is like something just feels weird inside my head, like my eyes can't focus correctly, and like things are just swirling around in there....It usually happens when I'm on the computer, or if things flash around my face, sometimes when I listen to music in my headphones..It is so disorienting...Is this something related to the absence episodes? Has anyone here experienced this? I'm eager to learn how to make this better and to learn as much as I can, as it is affecting my work. Anybody have advice for me?
 
Hi Lala, welcome to CWE!

Since you have practice in identifying and avoiding migraine triggers, that is the best place to start. Take note of the things that make you feel uncomfortable (like the hyperventilating, or the computer, or flashing lights), and see how you feel if you avoid them. It sounds like you may be photosensitive, so do your best to minimize exposure to lights and frequencies that are bothersome. For some, sunglasses or special lenses can help. (See http://irlen.com/index.php).

Do you know what caused your B12 deficiency? If you are a vegan or have gut-absorption issues, that can also potentially make you more vulnerable to seizure symptoms. For many folks, dietary changes seem to help to reduce their symptoms. You might also consider adding a magnesium supplement to see if it helps with the twitching.

Best,
Nakamova
 
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